4. Discussion
This is the first study to qualitatively investigate the challenges with
and information and mental health service needs of children with CF from
varying perspectives. The four themes and their associated subthemes
provide us with critical insights and knowledge to address their mental
health service needs. Children with CF experience a variety challenges
associated with their condition (e,g., worries about health, disease
outcomes, hospital procedures), challenges consistent with previous
literature 19-20. Social challenges based on their
differing expectations and responsibilities compared to their healthy
peers were also highlighted 21. Connecting with other
children and adolescents with CF was emphasized as an important way to
normalize and validate these experiences. Including ways to cope with
the uncertainty of the future, as well as providing social support
through shared stories of peers with CF is critical when considering the
development of mental health programs for this population.
The importance of children with CF learning about their CF and how to
manage it independently was prominent in our results. Previous
literature has similarly demonstrated that appropriate education can
help facilitate effective management and coping with CF, promoting
treatment adherence and overall well-being 22-23. An
important step to relieve anxiety and improve disease management may be
through providing CF-related education to children with CF. Opinions
concerning disclosing information about life expectancy and disease
prognosis to children differed between parent and HCP participants.
Limited research has focused on how and when individuals with CF should
receive information about their prognosis 23-24. One
study demonstrated that patients desire early, individualized
communication about prognosis and that age-appropriate educational
materials could aid in initiating these conversations among families and
HCPs 25. Deciding what information about disease
prognosis related to CF should be presented and how to present that
information are important considerations when considering the
development of an Internet-delivered mental health program for children
with CF.
Results outlined the ways children with CF cope with their illness.
Strategies included focusing on positive aspects of their life and
remaining hopeful in their ability to access effective treatments. These
strategies are consistent with previous research that has emphasized the
importance of optimism and acceptance in coping with CF25. Strategies to promote positive coping were
highlighted as well (e.g., discussions with parents about emotions
associated with CF; parental modelling of helpful coping skills).
Moreover, child participants noted that it is helpful to know there are
other people with CF that have shared experiences. Research across
various chronic illness populations have demonstrated that greater
levels of social support from friends and family, or others with an
ability to understand one’s experience, has been associated with greater
adherence to treatments and better quality of life26-27. Emotional support from friends and family, as
well interactions with other youth with CF, has been recommended to
promote feelings of connectedness and positive coping21.
Directions for mental health care services for children with CF were
discussed. Preventative mental health care was recommended to prepare
children to cope effectively with potential challenges they may face in
the future. Participants offered specific feedback about the development
of an Internet-delivered mental health program for children with CF.
Developing and implementing a flexible, stepped-care approach to care
where children with CF would receive a mental health prevention program
followed by further intervention for children with more acute needs may
be beneficial.
The current study offers valuable insights into the challenges of
children with CF and their families, as well as the information and
services they need, and their views on receiving and Internet-delivered
mental health program. A primary strength of the current study is the
inclusion of three different perspectives (i.e., children with CF,
parents, and HCPs). By including these different perspectives, a more
complete understanding of the experiences of children with CF was
achieved. Several studies have excluded children under the age of 12
years. By including younger aged children in the present study allowed
the experiences of this age group to be represented.
There are limitations to consider. First, as the study included the
participation of young children, building rapport was essential prior to
interviews to ensure children felt comfortable sharing information about
their experiences living with CF. As the time to build rapport was often
short, children may not have shared in-depth details of their
experiences. Additionally, based on their age and developmental
understanding of their condition, children may not have possessed
further information or insights to share. Second, all of the
participants were residents of one province in Canada, and their
experiences, particularly related to the health care system and
availability of services within CF clinics, may not generalize to other
provinces within Canada or beyond.